We busted out of the hospital!!

We have survived the week of the VA hospital!!

Checked in Monday morning, took Aiden off of all of his anti-convulsant medications, and sat us in the bed. 

Aiden looked so funny with his leads all over his head.  Sadly, the only picture I got was after the put a bandage wrap on the  whole thing to keep the leads on there better.  They don't allow cell phones to be on in the room so the fact that I got any pictures was contraband.

We noticed that Aiden was completely out of it for the entire first 24 hours.  They told us later that it is because of his pain meds that he is having these narcoleptic-like episodes.  Basically, they claim he is stoned out of his mind.  Ha ha! 

The morphine was also to blame for some of his jerking and spasming, apparently.

I'm not sure that all of this behavior is to be blamed on the pain meds, he was also having these episodes before he had morphine or hydrocodone but they were less severe and less often so I guess I will be happy if we just get back to that place.

Anyway, no seizures were happening.  So we played PS3 games.  We started with Pinball for the blinking lights.  Sure, this will bring on a seizure, right?

No.  But we did replace all of the high scores.  And I don't think anyone will ever catch us.  On Medieval Madness, we scored 49 million points in one turn.  That's not an exaggeration, it's a fact.  49 million points.

Sadly, it was the most exciting thing to happen all week. 

Because Aiden continued to be unhelpful in the seizure department, in spite of flashing lights on games, sleep deprivation, high levels of caffeine and sugar, strobe lights in his face, and forced hyperventilation, the doctors wanted us to stay until Saturday.  We politely declined, having decided that our sanity and our backsides could not handle one more day of sleeping there.  A was confined strictly to his bed and while I was able to leave the room if I needed/wanted, the bed was basically my only choice of where to sit in the room.  And they both sucked.

So we busted out (with doctor's permission) of the VA on Friday afternoon.  We have a new anti-convulsant for the next 3 months, a follow-up scheduled for then, and no diagnosis.  Which is the best thing that could have happened, really.  They are looking to chalk it up to the 'perfect storm' of stress in December, and if he remains seizure-free for the next 3 months, we will wean him off of all the anti-epileptics and officially close this door in our lives. 

Every one of those wires goes to a different spot on his head. 

I'm not sure I will ever trust him to drive again, though. 

Bad Dream. Very BAAAAAAAD Dream.

You don't need to read this, just skip to the happy post about Alex and Odyssey of the Mind.  It's all ready for you, just below this therapy session for myself. 

I was sleeping, like normal people.  I hadn't been sleeping well for months.  We have tried a lot.  Finally Aiden turns the mattress around and tonight, I was sleeping!  He's so darn thoughtful.

Then, in the sleeping, I have the dreaming.  And I dream that Aiden and I are walking down the sidewalk on the 4th of July.  Then he suddenly stops walking and seems to fall asleep standing up.  This is not unusual anymore.  Normally I just say his name kind of loud and sudden and he wakes up out of it.  I am 2 steps ahead of him and I turn around.  I say his name and he does not wake up, he falls over backward and hits his head on the ground.  Then he seizes. 

A police officer calls for an ambulance and he is taken to the ER.  Suddenly I am at the park for fireworks (it may not be the 4th of July, but there is preparation for fireworks so I don't know what else it is).  There are a lot of very old people there and they are all worrying.  It seems that Aiden's health was on some kind of broadcast or something but everyone knows.  The kids are also there and my friend, Keegan, is babysitting for me.  I keep telling everyone I have to leave to get to the ER.  Suddenly Aiden is there and asking someone for a chair.

I find him a chair and sit down.  I ask why he didn't go to the hospital with the ambulance.  He says he did go to SMMC but they already released him.  I ask if they knew he hit his head.  He looks at me and suddenly I see a very old man.  He tells me that he didn't care what the ER docs had to say; he told them he wanted to go back home to me and the kids for the few weeks he has left.  Then he tells me that he signed up for hospice care. 

I am now awake.  Sitting here thinking about the scary things we might go through in the next 2 weeks.  Reading young widow websites, trying to prepare for the thing that you can't really prepare for. 

I think that this dream is really pulling all of my fears into precise focus.  I am scared that I will lose Aiden through this.  So many things happening in the last 3 months have probably been symptoms of something larger that we ignored the small symptoms to.  When you have as many health issues as Aiden, I think you can easily chalk things up to other things and just miss larger problems hiding until they refuse to be ignored anymore.  (Or we are reading into things).

I am glad we are finally going to get some answers, hopefully, in our week in Portland, or at least shortly afterward, right?  I am also scared that we will get answers.  Scared of what the answers might be.  I am also also scared of not getting anywhere.

They have scheduled the next MRI.  Luckily they are able to do it the day before A starts his week long EEG so we are going to Portland anyway.  I am hoping they get the answers this time.  Or at least know before we leave town that they need to do it again before we go.

Anyway, our time is up.  Welcome to the crazy things I get to worry about.  I am 32 years old and not ready to be a widow.  So Hospice will really just have to wait until I am good and ready.  Like 85.  They can have him then.

Odyssey of the Mind... 20 years later

I have to get up in an hour to get ready for work and then take Alex to his school to drop him off for his first Odyssey of the Mind competition.  His group chose to write a play where one member has to be mute during the play.  We went last week to watch them perform to make sure they are ready for tomorrow's competition; it's such a cute play!  The thing about Odyssey is that the kids do it all themselves.  They wrote the play, they built the backdrops, they forgot to think about costuming... it's all very precious. 

I'm sad that I can't go with his group to watch them perform.  I was going to be a chaperon but then I used up all of  my sick leave and annual leave in December to stay home with Aiden and now I am sending him off instead.  We thought about going down tomorrow to see them compete but for many reasons have decided that it's time to cut the apron strings a little bit and let him have his time with his group. 

Alex is a funny kid.  He is in that awkward age where he wants to snuggle and hold hands at home or at the store but NEVER could he admit that he even knows who we are if we are within 100 yards of his school!  I'm pretty sure that would extend to Odyssey of the Mind competitions as well. 

I have had so much fun watching Alex and his group plan their performance.  I did Odyssey of the Mind from 4th to 8th grade and it was always so exciting and nerve wracking to get to the actual performance!!  I'm having such a great time seeing it through the eyes of a parent this time.

So Alex, we love you, we are proud of you, we want you to do great!

Please don't eat all of your bus munchy foods in the first hour. 

Clearly this blog has gone by the wayside for some time now.  I try to update.  I think about updates.  I fail to update.  But here is what I am hoping will be the mother of all updates. 

Also known as "my big fat excuse for not updating for so long". 

December 1st I got a phone call at work.  It was Aiden.  He said "I think, um, that I, um, passed out? Um, yeah.  Could you, come?  Now?  I don't know what happened.  I'm bleeding."

I got in the car and came home to find all three kids ready to give me an update and one very freaked out Aiden sitting on the couch with a bag of frozen peas on his lip.  Now, I have a first aid card so I looked at the cut and thought it looked a little big.  Mostly, though, I was concerned with the part where he passed out.  I called a triage nurse at the VA and, after a bunch of questions, she recommended we go to the ER.  So off we went to SMMC.  This was a natural choice between the 2 hospitals since Aiden had just spent 4 days in the ICU for a bleeding ulcer in November in the same facility.  (awesome)

The doc at the ER said he thought the passing out (syncope) was caused by a new prescription.  Yes, Aiden had started a new script that day but he had been on this drug for 4 years before and it had only been 2 years since he stopped it.  And he had only taken 1 pill, 4 hours before this happened.  But okay, we knew.  Don't take the pill.  Follow up with primary care physician within a week. 

We go home.  Aiden already had an appointment for the 7th scheduled with his doctor so we just get on with our lives. 

December 6th.  It's a Tuesday.  Aiden had a math final he was going to take in the proctoring center at the college.  He needed the car so he was riding with me to work so he could take the car.  I pull up to a stoplight.  Aiden goes into full tonic-clonic seizure.  (This is what we used to call grand-mal seizures.  They changed the name. )

I freak out after I figure out he's not playing some seriously jacked up game.  I pull over, call 911, and take him directly to SMMC. Again.  On the way, he regains consciousness.  He's very confused about where we are going and why.  He says he is fine, even as he is still dripping spit and snot from his face.  He is not yet aware of these fluids. 

I pull into the ambulance bay and Aiden tries to get out of the car.  Um, no.  I force him to sit until the nurses come out with a wheelchair.  They take him into a room and I go park the car.  By the time I get into the ER with him, they have decided he is clearly a drug-addict.  The inability to answer questions with any authority has NOTHING to do with him having just had a seizure.  Nothing related to him having been unconscious.  All they can see is that he has piercings and tattoos.  He is transgendered and so he MUST be ON SOMETHING.  The doctor just kept repeating "what did you take?  What did you take, Ai-DEN?" 

Later I found out that he ran a tox-screen to find out for himself what Ai-DEN had taken since neither he nor his "WIFE" (which is exactly how it's written in his notes in the ER report) would tell him truthfully. 

After the tox screen came back, we only saw the doctor one time.  He came to do an ultrasound of Aiden's heart as he was holding a steady heartbeat at 149 for about 2 hours. 

He said that I clearly did not know what a seizure looked like and that I had brought A in because of a syncopal event.  That there is often twitching and shaking to accompany passing out (syncope is fainting) and that I was wasting their time.  He did treat the elevated heart rate with some adenosine.  He discharged A with a heart rate at 99 and said we should really get in with a cardiologist as he had heard a murmur.

The next morning Aiden had an appointment with his doctor's fill-in (doc is on maternity leave).  Ms. Rupe, NP, had all kinds of things to say about what was going on.  She immediately told us to go home and pack a bag; we were going to Portland to the seizure clinic.  She sent us to SMMC to get an MRI and had a massive plan of action in place.  She also told us he cannot drink, take antidepressants, or drive (duh) until further notice. 

Later that week we were told that we would go to the seizure clinic on January 5th since this wasn't that big of a deal and they were closed due to holidays and the days they were open were fully booked already.  This is the first time I let myself cry about this whole thing.  There was no help and I was being told that he utter and unrelenting confusion and disorientation was normal and I needed to just deal with it.  Um, I AM NOT A NURSE!!

Saturday, December 10th.  My birthday.  Aiden  dinks around all day and is very shaky and just... OFF.  He decides to take a shower.  I get in with him since he is so very shaky and unbalanced.  I get his hair washed and rinsed.  I put the shower head back in the holder and turn around just in time to catch him as he falls into a tonic clonic seizure. 

I have Alex call 911 as there is NO WAY that I can get Aiden out of the tub on my own.  I get his robe and some clothes in a bag and get the kids ready to go to the hospital.  The EMTs help A out of the tub and take us to General hospital.  After the last visit to SMMC, no way was I headed back there.

General has a great ER doc who is quite serious about fixing this.  He points out that A's eyes are still seizing even after the major event is over.  He does some poking and prodding and makes other parts of him seize also (feet, hands, etc).  This man gives us a prescription for ativan and says to take one if any pre-seizure activity starts.  Like the jerking and shaking all morning.  It will help ward off any major activity.  YESSS!!!!

The next morning, Aiden bounces out of bed at 6 am.  He says it's time to rise and shine.  He says he feels bright eyed and bushy tailed.  I sense that something is very wrong.  Aiden is NOT a morning person.  I have never heard him say "bright eyed and bushy tailed" without saying "fucking" in front of it while mocking someone else who says it seriously.

I tell him if he wants to get out of bed, he needs to go see if Alex is awake and can babysit him; I have not showered or slept in 2 days and I am damn tired.  I can't go back to sleep and as I finally drag my ass out of bed, Alex comes running in the room to say that he thinks Aiden needs one of his pills, he is jerking and shaking. 

Now up to this point, none of the kids have seen a seizure.  I have not heard Aiden hit the floor though so I know he's not seizing yet.  I get him one of his pills and make him sit in the recliner.  He starts to calm down so I tell him I am going to go to the bathroom and I will be back.  I tell Alex to watch him.  2 minutes later I am peeing and hear the chair go all crazy.  Alex comes running down the hall to say he thinks Aiden is having a seizure, should he call 911? 

I get Aiden loaded up the car and make an executive decision that Alex is old enough to babysit a sleeping Ashley and an Annie that had come running down the hall to catch the end of the seizure show.  The kids stay home this time. 

We are in and out of General in 1 hour and 14 minutes.  While this is record fast, it is frustrating since there was no real help.  The doc this time tells me that I need to call 911 after a seizure so the EMTs can draw blood in the back of the ambulance to check for prolactin which is apparently produced in the body during a seizure but only lasts for 15 minutes in the bloodstream.  Without a prolactin level, he says, no one will ever take me seriously about it being a seizure.

As a fun part, Aiden is hallucinating.  A lot.  He is very apologetic to the IV pole that it is not a person.  He keeps seeing children sitting in and on things in the ER room.  The doctor tells me this is just from the ativan and I should get used to it. 

I am tired of people telling me to get used to it.

The next day, I call Ms. Rupe.  She is my only ally in this.  She gets us in for an EEG at SMMC.  It takes 9 hours from entry to exit.  I haven't been to work since the 5th.  I miss work.  No one seizes there.

The doctor finally gets the results from the EEG from Spokane.  They didn't see anything except slow brain waves.  Well, maybe that's from Aiden sleeping through the whole thing, right?

We go to Ms. Rupe the next day.  She is pissed.  She wants answers.  I love her.  She uses the F-bomb and is not shy about it.  She is scattered and flustered with me and I love her.  She acts how I feel and I love her.

She gets on the phone with the seizure clinic.  She tells them this is unacceptable to wait until January 5th. 

2 days later, we go to Portland.  (I love her)

The neurologist, Dr. Motica, is patient and curious and thorough as anything I have ever seen.  He leaves us in the room and watches the MRI films.  He says there is a shadowy place in the right temporal lobe.  The original doctor to read the films says it is old blood.  They say it is benign.  Dr. Motica says that they didn't run the type of contrast needed to be able to say that with any authority.  He orders another MRI with epileptic protocol.  And an angio-gram of the brain. 

It takes a little time for us to get back into SMMC to get this MRI done.  Aiden is now on anti-seizure meds (thanks, Dr. Motica) and wears a medic-alert unit ("I've fallen and I can't get up")  *(Thanks Ms. Rupe.)  (I love her).  I go back to work.

Since the beginning of the year, Aiden has continued to have break-through seizures but they are very small.  No tonic/clonic seizures.  We are still a shit show but we are a more put together shit show.  Finally, some sense of normalcy.  I must have gotten used to it.

The cardiologist in Portland had Aiden wear a portable heart monitor for a month.  They did a skype appointment where the doctor said that even though his heart rate is not normal, it is not a problem.  He says Aiden is just incredibly out of shape.  (I was not in on this appointment but later I point out that I am incredibly out of shape.  My heart rate is not this crazy).

The second appointment with the seizure clinic came with another EEG before it.  They really want to see Aiden seize on command.  He fails to.  Dr. Motica's NP, Collette?, tells us he wants us to come in for a week long study.  It is scheduled for the last week in March (they want me there and I cannot afford to take more time off of work so this is during my spring break).

Last weekend, we went back to Portland.  Why?  Because SMMC screwed up the second MRI, too.  So Dr. Motica had us come to his facility at OHSU and get it done by his people in his hospital his way.  (I love him, too.  But I don't love driving to Portland).

So yesterday he calls to tell Aiden that there is something on the new MRI from this weekend.  He says it is possible that it is just an artifact or maybe Aiden moved during the scan.  It is in the same place as the "benign" shadowy place from SMMC's films.  They don't want to alarm us.  It could be nothing.  We need to go back and get it done again. 

They haven't said it yet.  I'm pretty sure it's going to be in Portland. 

What is really fun is that with all of this appointment-ing, we still live day-to-day with reality.  Reality has become that there are days when Aiden cannot sleep for anything.  He tries and tries but eventually will realize there's no hope and he gives up. 

There are also days where he will pass out standing up from being so tired.  He describes it as narcoleptic.  It seems to be true.  Mid-sentence, he will just zonk out.  In a restaurant, walking, it doesn't matter, he is just OUT.  This week, he spent 48 hours, almost straight, in bed, asleep.  But it's not sleep.  It's just like dead.  He cannot wake up for anything.

Half of the time I am convinced Aiden is having the world's slowest stroke.  He loses words, says the wrong words, stutters more than he ever did, and gets confused about everything. 

The other half of the time, I pretend like this isn't happening.  I block out the part where his brain might never work right again.  I ignore the neurologist having said "mental retardation".  I try really hard not to think about the future.  It's a scary idea. 

Also, I don't talk to anyone about this.  Every Monday, the ladies at work ask how Aiden is doing.  I tell them the latest news and they get these looks on their faces.  These looks make it hard to pretend it's not happening. I really want to not tell them anymore.  But I have to talk about it with someone.  I don't have time for therapy (which I'm sure I need, too).  I don't have any friends or time to make any friends in Walla Walla.  My friends that live so damn far away, when I talk to them, I don't want to just rag on about how awful life is.  So I tell the ladies at work.  And they are kind and say "oh that's awful" and then I go cry in the bathroom and then get back to work. 

The kids, they have been amazing through this.  They have had some behavior changes and made me want to run away... but they have also gotten used to it.  They know the reality is different and we have had over 3 months from the first seizure now.  (that original event on December 1st, they decided it was a seizure, too).  They have adjusted as well as they can. 

And poor Aiden.  He has gone through all of this.  Doesn't remember December at all.  Has stopped asking me to tell him the story because he thinks he is stressing me out.  Every time he does ask me to tell him, I do.  And then a couple of days later he always tells me how this has made him consider his own mortality and that he is at peace with his life.  He says he wouldn't change anything.  He says he loves his life and he is happy and loves me and the kids and Walla Walla (and Ms Rupe) and our friends all strewn across the state and the country.  He says he hopes that everyone knows that he loves them even when he forgets to tell them.  He talks about missing his Coastie family (Leanne, Rachel, Laura, I'm talking to you guys, especially).

.........
So, I've got a pretty good excuse for not updating very regularly but also a great reason that I should be updating regularly. 

And if anyone wants to move to Walla Walla so we have some friends, I will introduce you to Ms. Rupe.  You will love her!

Easy Bake Oven

Annie and Ashley both asked, nay begged, for an Easy Bake Oven this year.  Their dad and Morgan got one for them to share.  They each also received some Easy Bake packets, too.

I remember getting my Easy Bake Oven as a little girl.  I was so excited to open the packets and get to baking.

"Oh yes, cooking on a light bulb" is the over-whelming memory I have of my mom on that day. 

The girls opened their oven a week ago at their dad's house for their Christmas there.  Morgan was sick the rest of the week so there was no chance to break in their cooking skills. 

Today, we got out the Easy Bake Oven.  They decided that they were going to make a pretzel pack while I got other cookie dough ready for later tonight.  By the time I put the last batch of dough into the fridge, there was flour EVERYWHERE (think: ceiling), pretzel nubs stuck in the pretzel pan, a couple of singed fingers, "hot" pan on my table, nacho cheese sauce in 14 million bowls, and 5 dirty bowls. 

Side note: have you ever seen an easy bake oven recipe pack? A cereal bowl is more than enough bowl; I think you could mix it in a 3 oz. Dixie cup.  There were ALL of my large mixing bowls with 2 sniffs of stuff in each.

The girls are so proud of the half-raw, coated in salt, stuck in the pan pretzel nubs they made.  They can't wait to cook their dessert dippers package. 

I guarantee that none of the foods shown here came out of the devil contration also shown here.

I'm just wondering which part is supposed to be EASY???

Annie assures me that's not what they say

Alex and Annie are both in the Explorer's program at their schools.  It's the program for smarty-pants kids they have here.  For Alex, that means he has one teacher for the last 2 classes of the day, Social Studies and Literature.  It turns out, Alex is really smart with zero motivation or gumption.  He pulled a C+ in literature for fall quarter.  And got grounded.  Apparently, he really likes to do the projects that she assigns based on the books they read but he doesn't like the writing piece.  So he just doesn't do it.

I thought he was doing much better so far this quarter so when we went to turn in the family tree project I made WE made, I was shocked to hear his teacher tell us that he has an F in literature at this moment. 

Actually, shocked doesn't cover it.  I was mortified.  "HOW DOES THIS HAPPEN?!?"  I seethed through clenched teeth.  "I just forgot."

His teacher filled in the words I could not come up with at that moment (my eyes were spinning in their sockets too fast) "That is not acceptable".

He is now grounded from everything.  Forever.  He tried to placate me with the fact that one assignment which he never turned in, she gave him 50/100 since she knew he had started it.  Then he said "And I got 100% on my family tree.  So now I have a D+. Can I be un-grounded now?"

He was completely unbelieving that I would require a solid B before he will be ungrounded.  Incredulous, even.  "That's going to take, like, forever!!!" 

"But so will my embarrassment at you having had an F," was my only reply.

Explorer's for Annie happens at another elementary school in town.  Two days every week, Annie rides a bus to the other school for 3 hours of smart-kid fun.  She wasn't loving the idea of working hard or having homework for the first time in her life, but she has grown to enjoy the idea of extra learning and applying herself.  It does, however, mean that she misses parts of her regular class. 

The Christmas program is coming up which means there is extra music class.  Annie is missing some of the practice sessions.  Her teacher sent home a CD with all the songs from her program for Annie to learn and practice to.  Annie firmly believes that they must be practiced at full volume on a continuous loop. 

She thinks she is doing a kind thing by closing the bedroom door while she listens.  All it does is distort the noise coming through to the rest of the house. 

I'm super looking forward to the Christmas program.  The girls love singing and performing and all the little kiddos make for a great entertainment each year. 

And I'll finally know why they say "We are 8 tiny reindeer working from Sesame Street!"

Hey, we can hide the bodies on the ride home...

Title lyrics from Blue October.  It's what I have running through my head today.

It's 6 am and I have been awake since 1:30.  Sadly, this is my norm anymore.  and I am freaking exhausted. 

Sometime after I stopped trying to sleep, I went to cnn.com.  I ended up reading this story about how the government and police agencies can track you anywhere anytime if you are carrying a cell phone that is turned on.  And not just in real-time, the phone companies are holding records of where you have been- sometimes for years!

Fear not, this is not a new consipiracy blog.... I will come back to that, join me now on an adventure in my work life:

Some things that happen at work, I cannot talk about with people due to privacy issues.  But some things I can.  In very vague terms, they are falling the fuck apart. 

 It's making work a whole lot of stressful.  So are the families that are holding together with bandaids. 

And remember, I can't sleep.  Ever.

So I am driving home from work last night, thinking things over and this song comes on the cd player.  "Hey, we can hide the bodies on the ride home..." 

-

hmmmmm... I could solve some problems.

....

I quickly sketched out my strategy (Please tell me I am not the  only one that does this) of how not to get caught.  You know how you do it, it's a thought process that takes half a second to complete.  Before you start, you're done.  But it involves driving down roads unknown to me at this time that I have never gone down before so I could hide the bodies on the ride home and not have it tracked back to me because I frequent that area. 

So, I could hide the bodies on the ride home.  BUT CNN WILL CATCH ME!!!

Hair growing WHERE?!

Annie is 8 and convinced she is in the throws of puberty. This all started when we were driving to their dad's house. Out of nowhere Annie puts her book down and sagely announced "I am starting puberty. For reals. There's hair in my armpit!"
She was undeterred when I told her that everyone has armpit hair. "No Mom, this is CuRLy!"   Oh yes, I was finally sufficiently impressed and let out of the conversation.
Until...
Tonight Alex said Annie has hair on her lip. "Oh my gosh, you're growing a *moustache*!" he announced.
Thus the hair conversation starts again and I am once again scouring her skin under her arm searching for any signs of puberty.

Of course, if she's really like me, she'll abhor puberty once it actually arrives. But for now, we are content to wear training bras and search vigilantly for hair in the armpits of an 8 year-old.

Sigh.

small thoughts today

The problem with having your children 2 years apart is that by the time one of them gets through whatever crazy phase they've been in, the next one is starting it.  Only you don't remember that they are just being [insert age here] and you think the next one has really lost her ever loving mind.  So you spend about 2 months trying to figure out what the heck is wrong with this child?!? and then you remember this seems hauntingly familiar.  This doesn't really help you very much though because the way you handled it with the last one will not work with this one because God has a twisted sense of humor and made each one of your children so very different from the others.

In some ways, however, the differences save their tiny little hides.  I don't know if I could handle having 2 of any of my children.  That doesn't mean I would ever give up the chance to have the three kiddos I have, just that it is both the rise and fall of parenting these days that they are all so very individualized.